Reaching Out When You’re Newly Diagnosed

A Friend in Need
Reaching out when you’re newly diagnosedby John Francis Leonard

As I’ve discussed before, I’ve left a full-time and stressful career behind me in L.A. To keep busy, I volunteer, have started writing, and work part-time for a local grocery store to bring in a little extra steady income. Some months back, a gay male coworker, one with whom I work closely (I’ll call him Robert here), reached out to me. My HIV status is not something I discuss openly at work, but I had disclosed it to a young friend there who decided it was something to gossip about. So, unintentionally, Robert was aware. It turned out to be a good thing because Robert was feeling a little shell-shocked, having just been diagnosed himself. It was obvious that he needed someone to talk to and I felt both honored and obligated to be that someone.

Robert’s family doctor was savvy enough to test him, given his history, and, when the results came in, quickly referred him to a local clinic. They assigned him a social worker to navigate the landscape of treatment and of what is probably one of the trickiest factors when you’re new to HIV. Yes, you now know that there are drugs you can and must take daily, but they’re not exactly inexpensive. Even with decent insurance coverage, as in Robert’s case, there are costs involved. How will you meet those monthly costs? And, let’s not forget, some of us have no insurance at all. HIV treatment can cost thousands of dollars a month and even co-pays can be daunting for someone who works full-time. The social worker got him started in the application process for ADAP, a national program administered by all fifty states, that pays for all or some of the drug costs for low to even median-income individuals. I have it myself and it’s been a godsend. So far so good, but obstacles started coming up.

Robert told me that again and again the social worker came back to him with yet more paperwork he needed. Each time he met with his caseworker meant spending time and money he didn’t have parking downtown. He was quickly becoming frustrated and the worker harder to reach. Robert is in his early thirties and has no clear idea of when he was infected and, in today’s treatment model, the more quickly you’re on medication the better. It had already been more than four months since his diagnosis, and still no meds. Even if it’s just mentally, the proverbial clock is ticking. Robert, I’m sad to say, was shutting down and not feeling very proactive. The social worker told him point blank that he wasn’t “homeless or suicidal,” he was way down on the list of priorities. I didn’t like hearing that. While Robert holds down a full-time job, he is definitely at risk. He is in fact homeless, having lost his apartment due to an expensive crack cocaine habit. He is also still engaging in risky behavior sexually. (Yes, Robert knows I am writing this and knows that I am doing it anonymously, so he’s fine with it.) He is very forthright about the challenges he faces.

Now, you can be easily treated when you have HIV once you have the right doctor. Trouble is, in getting that treatment you’re occasionally going to hit some roadblocks. It is vital that you be your own best advocate and get, even demand, the help you need. I saw clearly that Robert was in need of a guiding hand, so I stepped in and am trying to help. I first got him to my place where I put him on the phone with our state’s wonderful ADAP program. They make things very easy—all I needed was a phone and a fax. I put them on the phone with Robert and it turns out he needed only one missing piece of paperwork. He’s produced that and given it to me to fax. In a few weeks, he’ll have his medication. Things just needed a little push.

I’m worried about Robert still. I’ve helped with several things. I even sat in on our state’s interview with newly diagnosed HIV-positive individuals. Turned out to be harmless; they simply want to know if there are any partners they can anonymously inform and encourage to be tested for STDs. Trouble is, they pretty much strong-armed their way into getting him to meet with them, even calling him at work! It made him more than a little nervous and he’s already a little jumpy. I’ve certainly tried to be there to talk to. My partner at the time I was diagnosed positive had just been so himself, so I know how important that can be. But, I can’t do everything for him and being positive can and will be logistically challenging as time goes on. I’m going to keep an eye on him though and continue to nag him, especially about his drug habit. I can relate to that as well. What frustrates me is how a trained social worker gave up so easily on someone who could so easily fall through the cracks. Neither I, nor anyone, can make someone unwilling to help themselves do what is needed. But shouldn’t we try our best?

Incredible resources and information are just a mouse click or a phone call away. ADAP, the AIDS Drug Assistance Program, is available in all fifty states, though funding varies. Simply Google “ADAP” followed by the name of your state for more information. A good starting point for someone newly diagnosed could be the CDC’s National AIDS Hotline 1 (800) CDC- INFO(232-4636) TTY 1 (888) 232-6348. One incredible online resource that can further refer you to things like medical care and other coverage providers nationwide is TheBody.com. And drug or alcohol abuse and HIV are a dangerous combination; you can contact The National Institute of Drug Abuse at www.drugabuse.gov or 1 (800) 662-HELP(4357).

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In.

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Art & Understanding, Inc. is a 501 (c) (3) nonprofit organization. The mission of Art & Understanding, Inc.’s A&U magazine is to collect, archive, publish and distribute the growing body of art, activism, and current events emanating from the AIDS pandemic. It was created for the HIV-affected community.